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What happens next
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What happens next

› Forums › General Melanoma Community › What happens next

  • Post
    • August 2, 2016 at 9:42 pm
    Kristi Alfaro
    Participant

      I was diagnosed in March with stage 4 melanoma to the lymph nodes, stomach, bone and lungs.  I have done 3 ipi-nivo treatments and 1 nivo treatment.  I didn't get all four of the ipi-nivo combo because the side effects were too severe. My last treatment was on July 1st and that was the nivo only treatment. Since then I have been on steroids for colitis.  I'm not sure when my next treatment will be but oncologist hopes it will be soon. My last PET scan on July 13th showed almost a complete response.  There are still tumors left but they are so small they don't show up on the scan.  The lump under my left armpit is not gone completely but has shrunken a lot. The oncologist told me its probably dead tissue. What I'm wondering is that once the treatment is complete, do they remove the lymph nodes where the cancer first spread too? Or is this something they only do when someone is stage 3? I'm just not sure how much more the one under my arm is going to shrink.  Just a little confused.

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    • Replies
        • August 2, 2016 at 10:38 pm
        Polymath
        Participant

          Hello Anon,

          Congratulations on being a responder. Besides the setback with colitis, you can be thankful for plenty.  You skipped the CLND which appears to be gaining traction and went straight to immunotherapy.  I doubt there will be a need for the lymph node dissection later. Having dead (necrotic) tissue or tumors after treatments is not uncommon.  I think they missed something when I had my CLND and a tumor grew in the area, only to shrink later and then stabilize for well over a year now and its considered necrotic and no action is needed.  Once the steroids beat back the colitis, you will likely continue with the nivo-only treatments which are much less likely to cause severe side-effects.  There is no specified end-point for the nivo, and you will likely be on it for a year before considering going off all meds. Consider yourself lucky in that you have a chance at complete response with immunotherapy.

          Gary

            • August 2, 2016 at 11:48 pm
            Kristi Alfaro
            Participant

              Thanks so much for responding.  It's making a little more sense to me now. 

              • August 2, 2016 at 11:48 pm
              Kristi Alfaro
              Participant

                Thanks so much for responding.  It's making a little more sense to me now. 

                • August 2, 2016 at 11:48 pm
                Kristi Alfaro
                Participant

                  Thanks so much for responding.  It's making a little more sense to me now. 

                • August 2, 2016 at 10:38 pm
                Polymath
                Participant

                  Hello Anon,

                  Congratulations on being a responder. Besides the setback with colitis, you can be thankful for plenty.  You skipped the CLND which appears to be gaining traction and went straight to immunotherapy.  I doubt there will be a need for the lymph node dissection later. Having dead (necrotic) tissue or tumors after treatments is not uncommon.  I think they missed something when I had my CLND and a tumor grew in the area, only to shrink later and then stabilize for well over a year now and its considered necrotic and no action is needed.  Once the steroids beat back the colitis, you will likely continue with the nivo-only treatments which are much less likely to cause severe side-effects.  There is no specified end-point for the nivo, and you will likely be on it for a year before considering going off all meds. Consider yourself lucky in that you have a chance at complete response with immunotherapy.

                  Gary

                  • August 2, 2016 at 10:38 pm
                  Polymath
                  Participant

                    Hello Anon,

                    Congratulations on being a responder. Besides the setback with colitis, you can be thankful for plenty.  You skipped the CLND which appears to be gaining traction and went straight to immunotherapy.  I doubt there will be a need for the lymph node dissection later. Having dead (necrotic) tissue or tumors after treatments is not uncommon.  I think they missed something when I had my CLND and a tumor grew in the area, only to shrink later and then stabilize for well over a year now and its considered necrotic and no action is needed.  Once the steroids beat back the colitis, you will likely continue with the nivo-only treatments which are much less likely to cause severe side-effects.  There is no specified end-point for the nivo, and you will likely be on it for a year before considering going off all meds. Consider yourself lucky in that you have a chance at complete response with immunotherapy.

                    Gary

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